Thursday, September 10, 2009

Outpatients and the sun

Hospital appointment yesterday; and for the first time in many weeks the sun came out! On my first spirometry I blew so hard that everything went black for a second and I got a massive headache ;-). On the second blow I hit FEV1 2.82 FVC 3.8. Hum. Blows were again a bit disappointing but I'm not producing much, I just feel slightly wheezy. It's now been a while since I broke the magic 3.0 level. To be fair Doctor J.H. noticed it was down for me and actually looked up the percentage (a first as they don't normally do that in Manchester CFU, except for the annual) and I had it confirmed as 78% -my score for last years annual was 83% so some way down really. In mitigation I have just come off the back of a cold, but my chest does seem to have cleared so I don't know why really. I asked the Doc about whether my pseudomonas had any resistance to Colymycin, but my last lab tests had all came back with no resistance (to Colymycin or Tobramycin) She did mention Tobi nebs and how they could be more effective (standard practise is to do one month of Tobi, one month of Colymycin; the downside is that there is a slight risk of hearing loss and there is more of a chance of pseudomonas developing resistance to Tobi than to Colymycin; although she said it was quite rare and she could "count on one hand" the number of patients whose bugs had developed resistance to Tobi. Anyway, I'm down for a Tobi trial with the physio when I go back in a months time, probably using the INeb with the new tidal flow (she said it can take 30 minutes to dispense if you use the old way! Nooooo!). I've also been put on two weeks of oral Septrin (Co-Trixomazole) and Rifampicin to see if it can clear anything left on my chest from the cold. I was warned that Septrin can cause a skin rash, but so far so good. (Last night I had a dream that I developed a rash all over my arms, but when I woke up there was nothing there. I hate having "obvious" dreams ;-))

I also asked what my two CF gene's were (they couldn't find it in my notes; they'll get it for next time) and what my CRP level was, apparently the last one was 5, and it was 6 when I had my last set of IVs in summer, although it can get as high as 40 when I have a really bad cold and chest infection. Otherwise I'm going to make an effort to get out and get some exercise on the unused mountain bike that's been in my shed/garage for the last ten years; this summer some of my mates have turned into mountain bike bores; seriously, the last time we went out for a drink it was *all* they talked about, I was not impressed! But I guess if you can't beat em you may as well join them, I'm not going to talk about bike magazines in the pub though ;-)

7 comments:

Pegson said...

hey mate....

My names PeGsOn..

Work up it and you will get back to your 83 percent....plus maybe take yoyr weight and height into consideration if you have grown as that can play a factor in the percent
check out my blog. pegsoninthepresent.com

BizzleBee said...

I think youre secretly trying to be like me. At my gut wrenching highest I can get to 76% post I've ( I think , like you said Manx don't do percentages), so that's close to me. I take toni ( continuously once a day for about 2 years and no resistance yet... It works way better than coly, which I can't tolerate anyway. Finally, I'm on septrin and rifampicin at the moment. So see, you want to be me ;-) xxx

BizzleBee said...

Hmm that's the problem with typing on the itouch, many words come out wrong. Hope you're not confused by what I wrote! xxx

Katie said...

Tobi rocks - when I first went on it a few years ago my LF shot up and i needed way fewer courses of IVs. I'm sure you'll get back to previous levels, maybe even higher with tobi. As for your CRP - Pftt!When I started my IVs it was only 15 and two days later it was over 200 with the virus I picked up. You aint got nothing on me man!

Woody said...

Pegson - Hi, I'm 37 mate *unfortunately* my growing days are over
BB - I may be copying you, it's all wrong, I should be copying Jodie, with her 150% LF ;-)
Katie - heop your better, 200 CRP sounds a bit scary!

Tori said...

My CRP was over 160 when I first went into the hospital I think it was around 30 or 40 when I came out :)

Gemma said...

thats a really good crp, must be doing something right! Mine was in the 30's last time I think.
My tobi takes about 8 mins through the i-neb so don't worry, plus you dont have to mix it up like promixin xx